A £1.6m grant will help continue the legacy of an “inspirational” Sunderland scientist dedicated to improving the treatment of patients with cystinosis. Professor Anderson, who sadly lost her battle with cancer last year, and her…
On 10th March 2019 the Cinematic Syncopations Orchestra are hosting an afternoon of music from an array of movies, at the Blackheath Halls in South East London. Profits from the concert will be donated to…
We are incredibly pleased to report that our founder, Jonathan Terry, has been awarded an MBE in the Queen’s 2019 New Year’s Honours List. The honour is given to people who have made an outstanding…
NEW VENUE: The event will now be held at The Priory Rooms in Birmingham City Centre. The QE Hospital in Birmingham are hosting a ‘National Cystinosis Study Day’ on Saturday, 26th January 2019, from 9:30am to…
The family of Ava, who was diagnosed with cystinosis last December, have organised a sponsored walk to raise money for Cystinosis Foundation UK. The walk takes place on Sunday, 26th August 2018. At the time…
CFUK supporter Mark Hewitt got in touch with us recently, to let us know about his latest fundraiser: “I am raising funds for the Cystinosis Foundation UK, by walking the Yorkshire 3 Peaks Challenge on…
The 2018 European Cystinosis Conference is taking place in Berlin, Germany from July 13th to 15th. The main theme of the conference is “Growing Up with Cystinosis – The Opportunities and The Challenges”. At the…
On 14th-15th June 2018, Orphan Europe will be hosting the 3rd Ophthalmology Cystinosis Forum. This event will take place at the Radisson Blu Edwardian Kenilworth Hotel, 97 Great Russell St, Fitzrovia, London WC1B 3LB. The…
Cystinosis Foundation UK is a charity that helps and supports people living with the rare orphan condition cystinosis. We are looking for new trustees to bring their professional skills and expertise to the organisation so…
We’d like to say a big thanks to Michelle Hull, Tashaa Preece, Paula Kimberley and all the ‘Penkridge Runners’ who completed the 2018 Stafford Half Marathon. They raised over £700 for us on their JustGiving page.